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What will it take to persuade monolithic health systems to put patient’s priorities at the heart of what they do? As researchers, health professionals, and patients debated this question at the sixth international “shared decision making” meeting in Maastricht last week, the frustration was tangible. A survey to inform the meeting *reveals that while many countries are nominally signed up to initiatives to provide patients with the opportunity to participate in shaping services and making informed and shared decisions about their care. In practice, care on the ground is far from patient centred. Medical paternalism is alive and well.

Delegates pored over the reasons why shared decision making, which is widely seen as a cost effective intervention ( BMJ 2011;342:d2117), is not being mainstreamed in clinical practice. Could the messenger be partly to blame? Some thought so. Over the past 20 years disciples of what might be described as the “shared decision making” movement have majored on ethics. Patients surely have the right to be engaged as partners in care, provided with information about the harms and benefits of tests and treatments, have their values and preferences elicited, and supported to make preference sensitive decisions. Maybe they should have talked more about the potential of shared decision making to cut costs, reduce unwarranted variation in clinical practice, and improve the quality of care.

The money angle is certainly persuasive, particularly in the US where several states (according to the survey) have passed or are considering health care legislation that enshrines shared decision making and patient decision support. Dr Margaret Holmes Rover, from Michigan State University, cited an estimate that if the US Medicare Programme were to implement shared decision making using patient decision aids to help people make informed choices, it could save the programme $20.5 m per annum.

Other perceived barriers to implementation of “SDM” were raised and many dismissed. Professor Victor Montori, a diabetologist, who is head of Knowledge and Evaluation Research at the Mayo Clinic in Rochester, gave a bravura “myth busting” address.

“I came to shared decision making from evidence based medicine,” he explained, and the two are not inconsistent. “Evidence from research is not enough, we must incorporate patient’s values and preferences.” Shared decision making models differ, he emphasised, and it’s not about abandoning patients to make their own decisions. Decision aids are “fun tools” to help doctors work empathetically with patients, assess how much engagement they want, and then reach a shared decision. Working in partnership with patients rather than processing them through the health system “ brings joy,” he said. “It makes you remember why you went into medicine the first place.”

Time pressure does not preclude the use of simple, well designed locally tailored decision aids in routine practice, he argued, and described the models used in the diabetic department in the Mayo Clinic. Decision aids are also being used in the accident and emergency department, he said. “Patients attending the acute chest pain clinic already have death on their mind and they value being given statistics about the pros and cons of being admitted to undergo further investigation and treatment.” Giving information at this stage has, he said, resulted in a 50% reduction in admissions to hospital.

Several speakers provided evidence, from rich and poor countries alike, to rebut the view some doctors hold, that patients don’t want to be involved in decisions about their health. Research was also presented to suggest that with appropriate support, the old, seriously ill, and (health) illiterate can participate in decision making, and that there is little relation between what doctors think patients want and what patients really want.

One example of previous work cited was of patients being given the choice to have low or high dose radiotherapy after prostate cancer surgery. Doctors assumed patients would trade side effects for improved survival, but the reverse proved true. (doi:10.1200/JCO.2006.07.4955)

Of course shared decision making requires a “democracy” of information and a shared electronic record, which enables a two way conversation was, delegates agreed, one of the most effective ways to promote the process. Eliciting patients views can also stimulate innovative service design, said Dr Jan Kramer, a Dutch gynaecologist, head of the IVF clinic in Nijmegen. His department has been “revolutionised” by talking to patients and understanding their priorities, and it has resulted in “more trust between clinicians and the patients and fewer complaints.” Manning a virtual chat room to answer patient’s questions had not been time consuming, and it had paid dividends by reducing consultation rates.

Given the evidence on the quality and cost effectiveness of care there is surely a case for more health professionals and policy makers embracing the shared decision making movement. After all, most of our health care systems are broke and we are all likely to end up as patients one day.

*German journal for Evidence and Quality in Health Care. 4.105.Jahrgang 2011. Policy and practice developments in the implementation of shared decision making: an international perspective.

Like so many other promising innovations, shared decision making requires effective clinical leadership to unleash its potential. Patient organisations are calling for it, academics have demonstrated that it's effective, and politicians have promised “nothing about us without us”, but still paternalism rules supreme in medical settings.

In other types of major decision we're usually treated like grown-ups, trusted to make appropriate choices when given information about our options, for example when buying a house or choosing a pension. But informed, activated patients are still seen as a threat by many doctors, and those who want reliable evidence-based information about treatment options have to look elsewhere for it.

Isn't it time that Royal Colleges, medical societies and other clinical groups seized the initiative? They should be actively promoting more up-to-date attitudes among clinicians, demystifying medical knowledge and publicly acknowledging that patients have a right to participate in decisions that affect them directly.

Hazel Thornton

It is known that behavioural change is difficult to achieve – just think of obesity, for example. Clinicians are no different; comfortable in practising as usual, although recognising that the doctor-patient relationaship is not how it used to be.

Citizens, particularly those who become patients, need to recognise their own individual responsibility to bring about `partnership-healthcare` that has been found to be both satisfactory and satisfying for both parties in the unique doctor-patient relationship within consultations, and elsewhere with other health professionals.

There are numerous productive roles for individual patients (and their carers) who aspire to improve the millions of dialogues that occur. Patient and public involvment in research is a reality – in this SDM area and in others; people can contribute individually or in groups; directly or facilitated. Rigorous qualitative research methods enable people to contribute to improving the quality of research that should inform all decisions. Examples of this are the ProtecT trial; the Department of Health Health in PartnershipShared Decision-Making and Risk Communication in General Practice trial; the Thrombolysis trial – as reported by Koops and Lindley in the BMJ.

More action and better promotion (`selling the idea`) to THE GENERAL PUBLIC – i.e. those citizens who foot the bill in the UK for our NHS – would be a big step in the right direction. It is they who should seize the initiative – it`s THEIR health service! They don`t need to wait to be asked……